Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Saturday, May 30, 2009

Yesterday involved lab tests that required fasting in advance and no prednisone. Unfortunately, life went straight on from there to other scheduled events, and in all of that, taking the prednisone got overlooked. By evening, I was really dragging and hadn’t gotten much useful done, feeling sluggish and stupid all day. It was Michael who put the pieces together and asked about the fate of the day’s allotment of prednisone. Bingo: forgotten in the press of ongoing life. On reflection, yesterday’s experience includes some ominous foreshadowing as to the quality of life that might result if the next stage of the experiment calls for stopping off for a bit to see if my system will re-start producing the missing elements. Today is already better in the mental acuity and energy categories with the the early morning (two hours before rising) dose seeming to do its thing. That’s a good thing, since there’s a lot to get done that didn’t happen yesterday.

Is this all the placebo effect, though? Do I only think the prednisone is making a difference? NPR's report on a recent study is interesting in this dimension: hotel maids spend the day doing strenuous physical labor (especially the ones who work in hotels with really high-end, heavy bedding). In the study, only those who were educated about how much exercise they were getting actually showed physical benefits from the labor in their blood pressure, weight, etc. The control group, with all the same activities, didn’t. Do the ones who were educated start paying attention to their eating since they then knew they were getting a lot of exercise and there would be a positive payoff? Or, as the authors assert, was it really all the placebo effect and all in their minds?

Whatever, we believe that the current experimental regimen is making a difference, and we’ll take the benefits. Either way, we’re happy that the state of science is such that enough is known about all these interactions to conduct these experiments in the first place. We have to believe that, eventually, they’re going to get it right and more of what-used-to-be-normal will reappear in our lives. Cross your fingers for this happening sooner rather than later. We’re going to go back and add a tag to these posts for brain chemistry experiments, to be able to follow the string through the maze.

Unrelated to the chemistry experiments, other recent events have me thinking again about narcissism and its manifestations, not just its implications for leadership, which is my main preoccupation, but also in other venues. For leadership, one of my current quests is to develop a thought-provoking exercise about when it’s constructive for administrators and leaders to use “we” and when to use “I.” All suggestions and examples welcome, especially if you hear someone speaking in a circumstance where the meaning and effect would be different if the other were used. For example, President Obama uses “my” more often than I’d wish for him to do, just as he could really benefit from moving to an “and stance” instead of how often he uses “but” in certain settings. I get “my supreme court nominee” because it’s a personal choice and responsibility. But how about “our” secretary of education instead of “my secretary”?

In less elevated circles, is it just inexperience with public speaking that leads people to talk excessively about themselves at events that are really about other people? This phenomenon can be seen at funerals, commencements, testimonial dinners and even rehearsal dinners for weddings? What is with that? Sure, when you’re thinking about what you’re going to say, the starting place is how you experienced the person or the rite of passage in question, but that’s not the point of the event, and why don’t more people routinely recognize that and get past it? Who really wants to go to, say a memorial service and hear all about how the dead person did X and what you did as a result--and we never hear about the dead person again? Surely these are meant to be revealing anecdotes about patterns in the dead person’s life, and it’s so rare for the talk ever to get back to that topic. Usually, what we get is an extended rendition of the speaker’s own career/experience/thoughts, etc. Or the graduation speech that tells the speaker’s own life story with only the most tenuous of connections back to the choices facing the gradates. Why is it so hard to focus on the audience instead of on ones own self? I’ve been watching videos of some classroom interactions where the instructor’s lack of boundaries just makes me cringe: truly, it isn’t (or shouldn't be) about her, it’s about THE STUDENTS. Bah. On the other hand, one of the columnists on insidehighered.com posted a link to a truly wonderful commencement speech the other day. It's worth your time.

Summer weekends are good. Michael got great stuff at the farmer’s market and we’re looking forward to a relaxed-yet-productive few days. May yours be so, as well. Cheers.

Thursday, May 28, 2009

The visit with Dr. Thoughtful was almost entirely good news with some uncertainty mixed in. His office had a power failure the last time we were there, so the orders for more tests didn’t get logged in before we left, nor did we get it on a calendar, so he didn’t have all the results he would have liked before the visit. I’ll get the lab work done tomorrow. He agrees that the improvements observed since we started the prednisone seem to be positive and the uncertainty comes because we don’t have the test results, so making a plan for what comes next is premature.

One thing he said is requiring us to reset our expectations in a way that’s taking longer than seems predictable: we’d been working towards an acceptance of the residual right-side weaknesses I have, on the theory that this is about as good as it’s going to get. (And thankful for the improvement we are, too.) His reaction was surprising and positive: he sees no reason to accept where things stand as the ultimate achievement and is prescribing more physical therapy for the shoulder/neck. Of course, this means going back and wrangling with the insurance company some more, which believes I’ve had enough PT and certainly have enough functionality to call it quits. We’re game for this, and so is his office, so that effort is underway.

We won’t know a lot more until after the test results and another consultation with him. In particular, we won’t know if things are restarting on their own or if we’ll need a hiatus (along with the possible return of the swimming through mud cognitive functioning). That prospect is a little unsettling. On the other hand, the upside is large enough that we’re reassessing and working on acclimating to the idea. That’s the report.

The work involved in cleaning out my law school office is turning out to be worse than expected, especially at my current (low) level of energy. Uncharacteristically, I scaled back my goals and ambitions for the project and gave up on sorting through everything. What can be pitched right away is getting recycled and everything else just transfered into the filing cabinets that will be moved. My original goal was not only to pitch more, but also to sort everything being kept and pare it down in the process. That’s not happening. At first, this made me uneasy and stressed until I realized (duh) that it was just going to take more energy than is available right now. The spring travel schedule was doable, but has resulted in an ebb while the batteries recharge, or whatever it is they do. (Is that a correct usage of "ebb"? I cannot decide.) This cycle presents itself with regularity, and you’d think it would get easier to recognize when it happens. The current presenting clue is that I’ve been playing Wurdle and Bejeweled on my phone; in the normal course of events, those aren’t activities in my repertoire. Over time, we've learned that when they are interesting to me, it’s a pretty good indication that my brain is committed to coasting for a bit. It's odd how good I am at trusting other people’s energies, and mistrust my own. In any event, it’s time to let things bump along at low energy for a while. The office can get attention every other afternoon and call it good for the time being.

While this belated realization was presenting itself, so did the an understanding that the retrospective on Shea is in limbo because of how things stand with her at the moment. Our wires are crossed just now, and while it’s temporary and likely to repair itself soon, it does make it hard to complete a suitable appreciation of her generally wonderful qualities.

While the new software project--and the move away from Microsoft products--is generally pleasing, the spell checker in the Apple word processing program, Pages, isn’t as sophisticated as Word’s and has some truly annoying tendencies. There are words it simply won’t let be typed, for example. The most annoying is that it’s not possible to type the contraction for “could not,” and have it appear on the page. The software consistently and persistently converts it into could’t and fixing it takes effort, because retyping it simply generates the program’s views of how it should appear again. For a reason that’s not immediately obvious (thought will likely produce it later today), struggling this morning with the spell-checker brought to mind the odd moment after the first book manuscript was completed and in production. There was a lot of anxiety in that period (What if people hate the book? What if it turns out to be truly terrible and everyone else can see that instantly? Etc.) One manifestation of that was the compulsion to start a list of words not in the book. The list generated at the time is floating around somewhere, though in all the current upheaval, it’s not accessible. For days, I added words to the list, words that are good, expressive words, words that should have been in the book if it had been written by any other sensible, articulate person. It was certainly the most creative and interesting of the odd anxieties of that period. I don’t miss it. If this summer brings any forward progress (please!!) on the current book, and if it ever gets finished, will this recycle? That would be a good problem to have, to experience it again. I’ll try to hold that thought.

The weather is suiting itself to my energy level (or vice versa?), with rain this morning. Maybe the sunshine and my energy will reappear together. Back into the maw of the office.

Tuesday, May 26, 2009

The promised post on Shea still isn’t really done because it’s not quite right... it needs more marination, apparently. Being most effective in bursts means inevitably that there will be down times. Those always worry me, on the chance that it’s not a cyclical rest from on-all-the-time but a fundamental change in pattern, leading to a lifetime of sloth and torpor. It hasn't ever done that--yet--but the worry lurks in the back of my mind. Over the weekend, we had a great (though very short) trip to Madison to celebrate Shea’s graduation, brought Kearney back with us, went to the graduation itself, had a celebratory dinner with friends, saw Kearney off on her return journey and spent a day in alternating tiny bits of clutter-shoveling with doing nothing at all. The rainy grey day was perfect for cocooning, and it felt just right. This all sounds like a lot, and maybe it was, except that because it was all low-key and without any tension or pressure, it didn’t feel that way at the time. We all enjoyed the time together and the happy circumstances.

The graduation was as perplexing as these events usually are to me, and I’ve been to my share, as in all the years I was on the school board, I attended every single one. With 300-some graduates in the class, and taking place in the Assembly Hall, it’s not a personal event and no matter how much pomp and ritual is in place, it’s hard to make it a stately event, in part because of the setting and in part because of the mixed atmosphere. Even the university’s graduation there (with its ramped up attendance, pomp and ritual) is a little institutional in the Assembly Hall. In the years when I ushered Ph.D. candidates, I was really happy the floor was concrete, as it was cool in the otherwise warm-to-toasty gathering. The year Shea was born (in July), the May graduation was particularly hot, I recall. I can still feel the relief of the cool floor on my feet. That was also the year I started on the school board in November, so Shea’s graduation in many ways brackets the end of an era. At the high school graduation, there are families treating this as a major event, dressed to the max, screaming and tooting air horns to celebrate. Then there are families present mostly to mark an expected milestone, one on the way to the next stage of life. The event never really quite gels. And what speaker really has anything to say to high school graduates?

With the lovely weekend behind us, it’s an open question as to whether the motor will start again for the accumulated backlog of tasks and tidying needed, not to mention cleaning out my office at the law school. We’ve decided that most of the stuff needs to be culled, not just moved intact, so that’s this week’s main task. It’s a daunting one, as getting rid of things is hard for me: what if I need them next week? The paper and books that are candidates for recycling and/or shredding are items I haven’t touched in years, which reason would suggest would make it easier, not harder to shed them. But what if, after saving them for all these years, next year’s change in perspective and work renew the need for them? What about that, eh? Maybe next year will be the perfect year for finishing that project started ten years ago and never completed? Sorting and pitching usually generates its own momentum, once started, so I’m hopeful that just digging in will lead to a good outcome--though that again allows the back-of-the-mind question to surface: what if having done nothing yesterday, I’m stuck in sloth mode forever?

Today brings a return visit with Dr. Thoughtful, the physician who diagnosed the cortisol deficiency. It’s clear the experiment of artificially replacing the missing element is working: my energy levels are higher than they’ve been in months, and I was able to get through the over-scheduled period in good shape. That was a major victory and put “regular life” more within reach than it’s been since last summer. At the same time, we have some trepidation, because at least one possible outcome today is that we stop the prednisone to see if my systems start working again--which leaves the possibility of returning to the no-energy state that was so trying for months on end. Since there’s not much point in worrying about it, we’re trying to hang loose until we talk with him and see what’s next.

That seems to be today’s theme: wait and see. The weather is perfect for that, as it, too, seems to be in a wait-and-see-mode: maybe sunshine, maybe rain. We’ll know more this afternoon.

Saturday, May 23, 2009

The promised post about Shea is still in development as we approach her high school graduation tomorrow. It took more time than expected to finish up all the pressing loose ends once the semester was finally (finally) over. All the big deadlines were met (hooray!) and now the workload is back to a more reasonable level. The summer looks promising indeed. We’re picking up Kearney so she can come to the graduation, and it might now be as late as Monday or Tuesday before it can be completed in a form fitting the subject.

The time Michael and I spent at Crystal Lake Park between the hospital and home has been on my mind this weekend. It was a pause between two segments of existence. In some ways, this weekend--in a much nicer way, of course--is a pause between Shea’s high school years, not quite done until tomorrow, and what comes next. I pulled some pictures on our way out the door, and it is a reasonably representative selection of Shea over the years.

Thinking about the last year brought to mind the thought that even in the brain tumor arena, I’m a pretty serious overachiever. On the other hand, as Michael and I were talking about it this morning, there are lots of good things about that: we didn’t have to agonize over what treatment to pursue, or when. The answers were clear, our path was straightforward and we had no questions then, or regrets now. Those are luxuries you don’t often come by and we’re grateful for them. The replacement cortisol continues to work its magic and we’re so very happy for that. We see the prescribing doctor again on Tuesday and we’re looking forward to learning the next step. Meanwhile, onto the rest of the weekend and whatever comes next.

Tuesday, May 19, 2009

Today is Shea’s last day of high school, as impossible as that seems. She graduates on Sunday. The morning has been full of memories of this amazing and wonderful human being. She was a charming and cheerful baby, a cheerful and obstinate toddler, a cheerful and complicated child and adolescent. I’ve been thinking about two or three pictures of her in particular, which I’ll try to post tomorrow when I finally land after this travel binge of the last however-long-it’s-been.

On the travel front, let me pause a moment and say how great the shower rods are that curve the curtain way out, giving more room in the shower. If only this had come into hotel vogue before we remodeled our bathroom, we, too, would have one of these.

Of course the community of friends out there came up with someone in American’s operations at O’Hare, including an email address! Thank you, Kate. I’ll be writing after I finally get home and can clear off my desk, shovel clutter and do more than whatever is the most pressing item of the minute.

Last night, at dinner, this medical adventure came up, and someone remarked in horror “what a terrible year you’ve had.” I still don’t feel that way. I still feel that even my problems are luxuries and that, overall, this has been a good to great year. Sure, there was the scary diagnosis and brain surgery but there was also so much more: the family doing this together, the reconnection and unbelievable help and love with friends, the sense of caring and support from so many people in a larger community, great surgeons nearby so we didn’t have to travel, health insurance, sick leave, a flexible job during the recovery, and, of course, an almost-total recovery with more to go. What isn’t great about that year? In the ninth month of this adventure, life is coming back to normal and the remaining symptoms continue to recede, though at a slowerpace than in the beginning, which seems logical enough. If things don’t improve from here, we’ll be fine, and we continue to have non-crazy reasons to hope they will.

So here’s to a life of meaning filled with wonderful people. More about the amazing Shea, with pictures, in the next post.

Sunday, May 17, 2009

The end of the spring every-week travel marathon is in sight finally. One more trip next week, then nothing until mid-June, and then we’re off to France. Good things are within reach.

Recent travel has provided many opportunities to observe our system as it functions these days. Mostly, the TSA checkpoints are vastly better run than they used to be, reasonably efficient (given some of the baseline stupidities we’ve all bought into) and usually civil. The experience in Bloomington was anomalous in my recent experience; after stewing about it for a while, I did finally file a complaint with the TSA about it--which brought a non-response response,that can be paraphrased as: “thank you for sharing, we sent this to the site manager as we only track trends.” Swell.

Last week’s trip, in which I spent almost as much time in transit as on the ground, was interesting, mostly because it highlighted how well most things run these days, especially when you stop to think about the number of people processed by this system every single day. Colgan Air--you remember, the folks running the Continental flight that crashed in Buffalo--are also the subcontractors for United out of Dulles. I don’t fly United very much because it doesn’t service any nearby area. My experiences with it when I do have been relatively positive. Colgan Air, however, was out of another dimension, and provides a useful object lesson in how well most airlines seem to be run these days, at least on the ground dealing with customers.

Every single aspect of dealing with that company was bad, from the lousy communication and training of the gate agents (six hours of opportunity to observe one day), the poor management of the Dulles Colgan station, to sub-standard maintenance and ground procedures. The gate agents continuously on duty throughout the long observation period, including the shift supervisor who was constantly at this problematic gate, didn’t know how to work the equipment, couldn’t get their story straight, contradicted each other continuously, and didn’t bother to communicate with the 25 people in the gate area until there was a serious mutiny on their hands. Two airport staff passing through the gate area (to confirm that the gate’s computers worked just fine, the gate agents just hadn’t signed themselves in, which is why they couldn’t access their systems) gave us more information in five minutes--by calling the United operations center--than we got from the Colgan staff in hours. Three separate times, one gate agent made an announcement over the PA system that a different agent immediately followed--using the same microphone, once wrested out of the first person’s hands--with a contradiction. “No, don’t go to customer service, we’ve already rebooked you.” “No, the flight isn’t cancelled, it’s just delayed some more.” “No, that’s wrong. Wait for the next announcement.”

On the outward trip that was so badly delayed by mechanical problems, after the second time we boarded the plane, the ramp crew ran the baggage cart into the plane, causing another delay while the mechanics re-certified the plane for flight. On the airplane used for both outward bound and the return, there were five broken seats, distinctive because they were folded flat (forward) and taped down. Each time, as we boarded the same flight attendant said “sit anywhere because we took the seats out of the inventory but the computer is still assigning them.”

On the return trip, we landed late at Dulles, with many very tight connections among the passengers. It took 25 minutes to bring a ramp crew over to get the bags off the plane, even though we could see them all standing around within our line of sight, and seemed not to be doing anything special. Some of them might have been on break, but others seemed to be on duty and just not aware that a plane was waiting to be unloaded. Whew.

One of my fellow passengers said he had a cousin who’d worked for Colgan Air and had quit because of the management environment and the pressure to cut corners. If he hadn’t been blind, he assured me he never would have flown them again, but he had no other way to go visit his elderly parents. Live and learn. I’d drive quite a distance before getting on a flight they operate ever again.

The magnitude of the operational disaster that is Colgan Air was hard to grasp at first, and it made the annoying new gate check procedures of American at O’Hare pale in comparison.

Removed from the negative comparator, though, the new procedures are an issue I’m trying to figure out how to comment upon. Rather than loading gate-checked bags on the cart so the largest number of bags are handle-first, the new procedure loads the bags so they’re all sandwiched in sideways. It creates unbelievable chaos on the gate ramps--except there are never any agents there any more to see it. Anyone know anyone in operations at American, especially at O’Hare? It would be nice to find the right person to whom to send a comment. At first, I thought it was just a one-time incident, but it appears pretty consistent over the last few weeks, so I’m guessing they’ve changed a procedure, and it’s not a positive change.

Closing out the semester is taking forever this year. The bulk of the grades are all finally filed, except there are one or two stragglers. In any event, it’s good to have it virtually all done and to be able to move on to other things. Traveling again Monday, home Wednesday, and then I get to stay off airplanes for a while. That will be delicious.

Thursday, May 14, 2009

The pressure of the last few weeks is showing up in the clutter everywhere in our house, threatening to push us out. I’m off again this morning on the penultimate trip of this stupid scheduling period. Home Friday, off again Monday, home Wednesday for whole, entire weeks at a time. Wahoo! If only I can get there... Of course, once that’s over, I owe more people more items than is comfortable to think about. In these moments, the question is always “What would Scarlett do?” Think about it tomorrow. That’s the plan, at least for now.

I am SO looking forward to having some time to shovel clutter and otherwise restore baseline order to our lives. That’s just to live every day, and has nothing to do with the interrupted-in-the-middle (by this medical adventure) tasks of working on the basement, garage and attic. Sometime, I’d really like to get back to those projects, too. We have an infestation of Way Too Much Stuff. I itch to get back to seeing what can be done to reduce the quantities, even if only modestly. Progress is progress, and seeing just about any would be gratifying. Ah well. That all has to wait.

Shea has her last day of high school on Tuesday, which seems completely unbelievable.

Tuesday, May 12, 2009

There’s something about the grading this semester that’s getting to me. That’s unusual, so it needs more thought to sort out. Partially, I know that it’s the intensity this year from the unusual volume--it’s a long and not-very-interesting story, but I’m doing more than usual this semester. It’s stressful in part because of that volume and my need to get it done so other things can get the attention they need. Even so, my sense is that there is something else going on; I’ll cogitate.

The first signal was when the last bit of the raised skin on the incision on my head came off yesterday. It’s not exactly been a scab, but the one place that from the first day has been unhappier than the rest of the scar finally seems to be healed. Yet when something surplus to requirements fell off yesterday, one of the thoughts that trickled in after a while was “back to that pattern again.” What pattern? That’s complicated; when growing up, my father’s habit was to draw out patterns in others. This was never a good thing: a pattern usually meant that you were failing to measure up in some way. The theme he used to weave around and through those affecting me can be summed up as “a day late and a dollar short.” Thus, I just missed qualifying for Phi Beta Kappa (some minute portion of a grade-point separated me) even though my mother had, of course, easily qualified. Ditto some other academic honor he figured should have been easily mine. And then there were the birthdays of our children. When the girls were small, from the days they were born on, he often “joked” about how close I’d come to producing them on “the right” days. Kearney’s birthday is one day after my father’s and four days before HIS father’s: could not I have hit either mark, given their proximity? There’s something wrong with Shea’s birthday, too, which isn’t coming to mind just now.

It wasn’t that any of this had that much impact: by then, I’d worked through a lot of the constant hail of criticism and was not only inured to it, but able to reject most of it. Usually, I managed to feel sorry for him that he should live in such a box and push people (well, certainly me) away through that world view. What does it say that your first comment about the birth of your first grandchild is that it’s on the wrong day? Too bad for you is what I say.

On the other hand, leftovers are still there lurking in my psyche because the thought floated by when the last bit came loose yesterday: just missed the eight-month mark from the surgery; here’s Tina, a day late and a dollar short again. There’s no point in going into how many ways that’s stupid. That would take a lot of cataloging.

Instead, it’s a useful marker that I am anxious in some way that’s worth heeding--as if the strange dreams, tight muscles and other general stress hadn’t been marking this clearly enough. Oh well. The best news is that one of the dreams that threatened to go off the rails and become truly disturbing took a different turn when my dream-self acted like a grown-up and changed the course it was following. That was nice. At the same time, for the first time in weeks, I hit that wall of no-energy yesterday afternoon and needed a nap. Another signal to heed--as soon as the grades are in. All roads lead there right now, so on that note, back to the grading. At least it’s a visually-pleasing time to be doing it: we’re in my absolutely favorite part of year, before the big heat comes, yet while everything is green and gorgeous. On most of the second floor of my house, we exist in trees through our windows. It’s a great place to live. As soon as the grades are done, it will be a great time, too.

Saturday, May 9, 2009

My brother Glen worked for decades with a top-notch endocrinologist with whom he put us in contact, and who who has been advising us as a favor to Glen. In a telephone conversation this week, we learned more about the interactions of brain surgery, cortisol, prednisone and the adrenal system. In response to his questions, it became clear that both my energy and clarity have turned a corner since starting the low-dose prednisone every morning almost two weeks ago. In short, people with low cortisol levels usually feel sluggish and have low energy; that would sum up where I’ve been for months--and also explain why things have been so much better recently, despite the stress of too much travel and the usual, nutso end-of-semester workload. Prednisone is a synthetic steroid being used to supplement my self-produced cortisol, and the low dose I’ve been taking helps my system think it’s getting what it needs.

Cortisol is produced in the adrenal glands when signaled by the hypothalamus and pituitary. My levels were lower at their highest point than the minimum expected normally. A recent ACTH stimulation test has shown that my adrenals produce more cortisol when stimulated, so we know this is not a primary adrenal failure (very good news), but instead a secondary or tertiary one. The plan is to stop the prednisone after a month and see if my body’s pituitary to adrenal signaling has bounced back enough to keep me supplied. Thank goodness for the doctor willing to take the time to explore a variety of options and formulate the hypothesis leading to this chemistry experiment with my brain. Unfortunately, cortisol has nothing to do with the memory holes I’ve been experiencing; the endocrinologist told us that if cortisol helped short-term memory, he’d be taking it himself. (Who wouldn't be?)

One of the great things about this fine and generous gentleman is that in addition to his expertise in endocrinology, he’s also experienced with the interactions of brain surgery with these systems. While I might have heard all this information before from the neurosurgeon (or maybe not), this was the first time it really sank in. In short, the cognitive deficits I’ve been experiencing are standard effects of brain surgery, both from prolonged exposure to air and the general trauma to the brain. While it’s not common, it’s also not unheard of for a surgical site even as far away as mine from the pituitary gland to affect its functioning, in addition to the general addling effects I’ve demonstrated with such determination. He also explained more clearly--or perhaps we’re just at a place in the process where it was more meaningful to us and thus we absorbed it better--that a year is a fairly standard period of time for these cognitive symptoms to improve. Apparently, around the year mark, even people who haven’t shown much, if any, recovery in cognitive function sometimes make a marked gain. As I’ve clearly been improving all along, though much too slowly for my taste (I can hear you thinking thoughts about my impatience), the prospect of continuing improvement in the near future is heartening. The surgeon had told us “a year to eighteen months,” but I don’t think we ever fully understood how or what that meant.

Tomorrow marks eight months since my surgery, and really, in the big picture, things are going very well. This recent improvement to us marks another corner turned, so much so that we’ve decided that we’ve moved on a phase, and are today inaugurating Part Eight of the adventure. We’re calling it “Light at the End of the Tunnel?”

In the big picture, my children have a mother, and I’m mostly who I was, most of the time. Regaining energy on the scale of the last week or so is a vast improvement--hard to overstate--and one for which I am incredibly thankful. My recurring balance problems, cognitive deficits, scalp sensitivity and limitations in my shoulder/arm mobility are all small potatoes seen in this light. There are effective compensatory mechanisms for all that need them. (I just don’t brush that part of my hair with much vigor, for example. Big deal. Or try to put my arm behind my back.)

Over the past few weeks, even the problems with field-of-vision complexities have abated. I still have odd responses to turning my head, especially to the left, while moving, and have even stranger, usually unpredictable, responses to movement in my peripheral field while I’m also in motion. That combination is the most likely to lead to severe balance problems, up to and including falling down. On the other hand, now that I’ve become more aware of the triggers, I can both limit the circumstances in which they occur and manage them better when they do. I’m quite a spectacle in some of the balance exercises we do in our weight training, though. It’s a good thing the people at the gym are both kind and understanding. The trainer we’re working with is particularly observant and thoughtful in designing exercises that keep pushing the boundaries of my abilities, so there’s one more blessing for which to be thankful.

Have I achieved my goal of meeting this adventure with patience and grace? Yes and no. The marks for grace are much higher than the ones for patience, and neither of them are really in the top rank. However, overall, I’m grading them as acceptable and focusing on the part where more growth seems possible.

This adventure has been a remarkable one, the more so for all the friendship, love and support we’ve received from so many of you. Our tighter connections to the people we love have been a special bonus. We send you our profound gratitude,caring and love.

Thursday, May 7, 2009

The other night at dinner we had another of those interactions that gives me a sinking feeling in the pit of my stomach: Shea was negotiating with us to travel to the memorial service for a friend’s grandmother (whom she never met) to be able to spend some time with the friend and another they’d voyage to go see. There’s nothing unreasonable about it--she is essentially done with high school and Michael and I each did much longer voyages alone at that age--it’s that I was taken aback to hear that the friends’ grandmother had died. “I would have sent a note!” I exclaimed, if only Shea had told me.

Except, she had. Again, it was in proximity to the memorial weekend when things were pretty stressful, but still. Even Michael remembered the conversation, and Michael has always forgotten all kinds of human interactions, even though he never forgets anything about machines or technical specs. Losing info that even Michael remembered on top of my other recent memory lapses was frightening. I struggled with this for a few days before balance reasserted itself: what’s scary about this is that it might get worse, and after all, it might also get better, too. For now, I’m able to do my work with only small adaptations, I can travel without major restrictions, and there are ways to compensate for most of the deficits I have. I cannot control whether they get worse, only make the best of where I am right now.

Perspective is good: as many drawbacks as there are to business travel these days, it does have the virtue of showing us other ways of doing things and letting us count our blessings for the good things in our lives. Yesterday, I left from an airport not my home one and observed an interaction at the security line that made me uncomfortable with no good way to speak up. The woman in front of me, traveling with a baby, and also not of standard-issue midwestern origin, was given so much trouble going through security that I was embarrassed. This only intensified when I breezed through without so much as a look at my belongings by the pre-scanning person, and arguably the things she’d made the other woman throw away were not that different than what I took through without examination. I’ve never seen anything like this at all at my home airport, and I go in and out through there a lot. It’s respectful and even-handed in all of my observations, in contrast to yesterday’s uncomfortable experience.

The hotel, a standard business hotel these days, is nice, with all the features these places have these days, plus, thankfully, reasonable internet access. On the other hand, the bathroom is elegant looking but not functional. There’s no way to take a shower without water getting all over the bathroom floor, there’s no place on the truly gorgeous sink fixture to put a toothbrush or a bar of soap, and the water is harder than what we take for granted in central Illinois. So, balance is reasserting itself, again, and I’m appreciating all that’s truly wonderful about my life.

Here’s the question my hotel breakfast leaves me with, which seems profound to me: why do we not ever get credit for all the fattening things we don’t eat, even when they’re put before us? Why does it only count what you do eat? It sure seems to me that there should be a system for credit where credit is due.

Tuesday, May 5, 2009

On the weekend, thinking I was being really pro-active, organized and generally on top of things, I sent out a bunch of cheery emails to schedule two family celebrations: for Shea’s graduation from high school and for the joint grown-up birthday party we hold for the girls each year, in addition to whatever they do with their friends. The only teensy problem is that I’d already done this, and the dates were already set. I personally negotiated the dates and entered them on the calendar, of which I have zero recollection. In fairness to me, apparently I did this when everyone was here on the memorial weekend, so there were a few things going on, but still... I’ll be really, really glad when the chemistry experiments in my brain are over and my memory reverts to something more like normal. If, of course, that ever happens. Meanwhile, I’m getting ever-so-good at grinning and bearing it. Some things, you’d rather not have this much practice doing.

In fourth and fifth grades, my friends Susie and Nancy and I used to draw facades of houses and floor plans, to the point that we sometimes got in trouble for doing that instead of our work. That phase vanished until recently, when it feels some days like I’m back in fourth grade again. Waking up this morning, I was thinking about the dream work space for us. In the study that Michael and I share, we’ve organized things so at least part of Michael’s work space is hidden so I don’t have to look at his clutter. (My papers all spread out are not clutter, they’re my organization.) Our dream space would have a master bedroom-bathroom-office suite, separate from the public parts of the house. The work area would be noise and light-shielded, so one of us could be sleeping while the other worked. It would have a big worktable that would be kept clear all the time. (Hah.) In addition to a great kitchen, it would have fireplaces, a separate dining room, and a nice space for a guest suite. Of course, we’ll probably never get around to it, but we do talk about building a house; Michael wants to design and build (himself, not contracted out) something energy-efficient, into a berm. I like lots of sunshine and peaceful vistas, woodwork and the idea of space designed for us. Fourth grade had its fine points!

Yesterday, I taught my last class at the law school. That’s a little bittersweet. I’m going to miss the students especially, along with some great colleagues, after the move to Business later in the month. It’s hard to know what to expect, and I’m excited about the adventure to come. For now, though, there are many, many, many final papers to grade.

Saturday, May 2, 2009

Spending a lot of time in airplanes and airports recently, there’s been little evidence of reduced crowds or any paranoia about a pandemic. Boarding a plane last night, there was one woman wearing a mask around her neck, but as it wasn’t over her face, it wasn’t clear what her purpose was. Maybe she only wore it in flight when the air recirculates? In O’Hare another night (they all blend together), when someone nearby me sneezed, covering it appropriately, and worried out loud about her allergies scaring others, another bystander loudly commented in a nice voice, “regular sneezing isn’t a problem, only coughing.” In general, facing the regular delays and indignities of air travel these days, people seem more relaxed and easygoing; it’s been quite some time since I’ve seen any major display of pique or a temper tantrum by a passenger in an airport, which is a nice thing.

Kearney and I have been thinking about writing up our counting exercise for a medical journal in one of the “patient perspective” columns and these airport experiences (as well as recent professional encounters) have me thinking about the big things-little things conundrum: in medical care as in so many endeavors, it’s essential to get the “big things” right. The big things include the skill of the surgical team, quality of diagnosis, appropriate medications, etc. While those are all necessary, the conundrum is that they are not (always) sufficient. Assuming that the big things are going well (a big assumption), it’s the “little things” that affect the quality of the experience and leave lasting impressions. The O'Hare baggage handlers for the commuter flights have a new and terrible way of loading carry-on suitcases on carts, so they're packed in a way that makes them extraordinarily difficult to get off and increases the congestion in the jetways, etc. The good will that passengers (so far at least) bring to these messes really reduces the stress of it all.

In the medical setting, we were all very focused on the good imaging, diagnosis and skilled removal of the brain tumor. (Duh.) What influenced most our experience of the hospital recovery in the end, though? Whether we could read the name tags of the bedside care staff, whether each made eye contact and how they spoke with us, the difficulty of decoding the discharge instructions, etc. It’s like my email in-box. The thing that matters the most is that I keep the main projects going at a high level of quality. Yet it’s not enough to keep the projects going, it’s also critical to maintain the communication with those involved with and affected by the projects, respond to inquiries and acknowledge suggestions. That takes emotional energy, which sometimes ebbs after working hard on the projects. And that all takes place before lifting one finger to maintain the people connections in life outside of work. These are a high priority in our value system, emphasized by our recent life experiences, and they demand their share of the short supply of energy as well.

As applied to the piece Kearney and I are thinking about, it seems somehow unfair that the overall impression of a complex medical procedure can revolve around such small matters and ones not always under the control of, say, the brain surgeon. His bedside manner made an enormous difference in this entire process, as did, of course, his skill. Yet in the end, in our memories, the kindness of the man delivering the food holds a disproportionately large place, as does the counterexample of the nurses treating me like an object while pursuing their own objectives by and around me. All that we know about decision-making and social psychology explains these effects, but never quite reconcile them comfortably.

Where does the energy come from to take one more breath and go the last half percent to cover the little stuff well, too? That’s the central dilemma and it’s a hard one. I see manifestations of this problem at play all the time in the work I do with work groups, where an administrator might be doing a stellar job of managing the big picture, yet not respond to greetings in the hallway and thus be taken as rude, or not otherwise communicate well about matters handled, so the word on the street becomes negative or individual impressions harden into opposition. It’s so hard to convey to such leader the unfortunate truism that ignorance breeds pessimism: in the absence of facts, people make things up, and what they make up is usually worse than what’s actually happening. It’s a real-world application of the sinister attribution bias: When the “little” communication doesn’t flow smoothly and regularly, when there’s no feedback, people tend to attribute sinister motives to others. The conclusion is that bad things are happening, it is shared with others who concur and the negativity can spiral down and out in ever-larger circles.

If we can only find a good opening and nice way to frame the big stuff-little stuff conundrum, our counting exercise illuminates it nicely. The punctuation, of course, is the form letter we got back from the hospital CEO saying “thanks for writing,” after receipt of our letter and report and the complete silence of all the physicians we copied on it.

This weekend brings a grading binge as it’s the end of the semester. The last sessions of each of the classes I teach are coming up Monday and Tuesday and then there’s yet another airplane trip in this continuing travel-every-week segment of my life. I’ve had actual thoughts about things that might get written, but not put one one word on paper. It will be nice when I’ve paid my dues for the unfortunately poor scheduling choices I made and actually light in one place for an extended period of time. That is yet a few weeks away, so here’s a deep breath and one more foot in front of the other for yet another stretch.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.